VLCAD to be added to the newborn screening UK and worldwide
VLCAD to be added to the newborn screening UK and worldwide
The Issue
Myself Gemma Holtby & Laura Linford have set this petition up as myself and Laura's children Alex 5 & angel Jack who was 2 have vlcad (very long chain acyl dehydrogenase deficiency) vlcad is not currently on the newborn screening system and many families are loosing babies just days after giving birth, before knowing vlcad is the reason. Therefore having this on the newborn screening system would save lives. I was diagnosed at 30yrs old after giving birth to my youngest son with vlcad and I am still awaiting for genetic testing, there are other adults that have been diagnosed late in life with this and family members are being refused vlcad testing on their children and newborn family members. Please can everyone help with this pettition and lets get this added to newborn screening to save the lives of newborn babies and anymore heartache on future families.

The Issue
Myself Gemma Holtby & Laura Linford have set this petition up as myself and Laura's children Alex 5 & angel Jack who was 2 have vlcad (very long chain acyl dehydrogenase deficiency) vlcad is not currently on the newborn screening system and many families are loosing babies just days after giving birth, before knowing vlcad is the reason. Therefore having this on the newborn screening system would save lives. I was diagnosed at 30yrs old after giving birth to my youngest son with vlcad and I am still awaiting for genetic testing, there are other adults that have been diagnosed late in life with this and family members are being refused vlcad testing on their children and newborn family members. Please can everyone help with this pettition and lets get this added to newborn screening to save the lives of newborn babies and anymore heartache on future families.

The Decision Makers

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Petition created on 1 November 2014